NZORD Newsletter 2003 #8 - 15 August 2003
NZORD - the New Zealand Organisation for Rare Disorders Hello everyone, Behind the headlines on the variant CJD scare -
some thoughts on the other tragedies involved. Quoted below are some brief excerpts from today's press
release/commentary on the state of rare disease research in New Zealand. We're pleased to note a slightly edited version
of this has featured in the Herald's Dialogue column today.
"A very unfortunate young man lies gravely ill in Waikato Hospital with a serious neuro-degenerative condition. The
country nervously waits on tests for variant CJD. Damage control is activated to avert any link to New Zealand's beef
produce. If you thought the initial public comment was mostly about markets and the dollar, you would not be too far
from the truth......"
"Many of these rare diseases are not well understood, and often difficult to diagnose. Treatments are much rarer. Cures
can be written on the head of a pin. But some are well understood. Some could be prevented right now through enhanced
screening and faster diagnosis. Some could be treated effectively with innovative but expensive medicines. With greater
commitment to research, the burgeoning knowledge of the genetic cause of many diseases could lead to treatment for many
more in the near future....."
"The predominant ethic in health policy should be the obligation to actually do what has become possible to do. It is
time this 10% of the population had their day in the sun. The continuing tragedy for the community is that the chance to
get better control of rare disorders is left unanswered, when increasing numbers of them can be managed." Read < http://www.nzord.org.nz/internal.asp?CategoryID=100009=100066=100120> more.........